Understanding the needs of women considering risk-reducing salpingo-oophorectomy

Background: Because of the significantly increased lifetime risk of ovarian cancer associated with inheritance of a germline mutation in the BRCA1/2 genes, women with a deleterious mutation are recommended to undergo risk-reducing salpingo-oophorectomy at age 35 years or once child-bearing is complete. Significant time is often spent by nurses trained in genetics providing counseling to improve the decision-making process. The decision to undergo surgery is complex and laden with several sources of uncertainty. OBJECTIVE: We conducted a qualitative study among female carriers of deleterious BRCA1/2 mutations to address these uncertainties. Methods: Twelve qualitative interviews were conducted with women who had received a positive BRCA1/2 test result to explore their understanding of ovarian cancer risk, prevention options, and resource needs. Qualitative content analysis was performed. RESULTS: Significant information gaps in level of risk, other factors associated with ovarian cancer, and details of prophylactic oophorectomy were identified. Personal experience with cancer colored the degree of risk perception associated with the inherited mutation. Fear of the adverse effects of surgical menopause, both physiological and psychosocial, was common. Women expressed interest in hearing from other women facing the same decision. CONCLUSIONS: Women facing the decision to undergo risk-reducing salpingo-oophorectomy have several information gaps and unmet needs despite comprehensive counseling. IMPLICATIONS FOR PRACTICE: Based on our findings, we make specific recommendations that will guide nursing practice and future research.